Friday, August 29, 2014

"I don't..."

"I don't agree with the plan and theory". Those are the words included in a message from my Pain Mngmt dr this morning. She is good so I know she wouldn't say it lightly. She knows me well and knew me before I began seeing Dr.Bragg (just over 3 yrs now) so she (Dr.B) has seen the pre-2 shunts ups and downs. Prior to Dr.Bragg Dr.B tried many, many different medications (medication classes) over a long-ish period of time to try and improve the headaches. She was always a firm believer the symptoms I was having where headaches/symptoms from the then LP Shunt and tried many, many times to get others to help. Some of my Specialists at the time tried also to help her but others where of little help.
Thankfully through a friend (someone I worked w a bit at APF who formerly worked at UW) I was able to find a Neurosurgeon willing to see me and in turn through that dr. found Dr.Bragg. I am forever grateful to her (Dr.B., and Dr.Bragg) for having believed me when I am sure there where many reasons why she did not have to see me (including her partner who had not believed me nor believed drs. of mine who where communicating with him).
Although I don't think she has given up (I hope not, it scares me actually) I do see how different it is then in the beginning, everything takes so much longer. In the past if I'd have called with a question (regarding changes in symptoms) they would have called back but now I just feel like a pain in the arsh pt. (whether true or not on my part I don't know). I am sure part of it is that she is just much busier given likely she has more things to do having been in practice longer. That said as any patient knows it doesn't make feeling worse and feeling like everyday is a big question mark any easier.
For as long as I've been dealing with a lot of Specialists I've still just never gotten used to having to rely on someone else to feel better or having to ask for help! I admire pts. (or families) who have no qualms about calling their Providers or pushing for answers (I think I am pushy but I am not sure if it's a good thing).
Honestly to I think I could do better to have better patience, which has never been a particular strength of mine when dealing w medical stuff, waiting for answers (solutions).
I wrote on fb earlier "I can honestly understand why pts just go to the ER, atleast your likelier to get answers, though I don't think it's the right thing for me to do right now". After not hearing back from Dr.Bragg's office today (called her Secretary regarding my PM drs. thoughts and regarding vision changes w the headaches) I really can understand why pts just get to a point where they feel bad enough or feel bad even if intermittently and you feel like it's just not going anywhere fast that going to the ER might get a solution or at least feeling a little better, faster. I'm not going but boy do I wish I felt better. =/

Honestly b/c I don't always come up w questions to things we talk about right away after appts. I miss being able to email and she would respond. I miss us coming up with solutions faster, even if it didn't always work we atleast got relief intermittently and sometimes just having a small bit of hope, that relief might happen or even when we'd get temporary relief it was enough to re-charge me to keep on dealing w this, to keep on pushing.
I realize it may sound like I am giving up, or depressed and I am not but I am discouraged and that is hard. I just want to be able to have hope. I just want to be able to do things without thinking about (praying) i'll feel ok or at least ok enough and almost most of all I just want to be able to read without feeling "the dizzies" (as a friend whose daughter who also experiences the same vision issues when having shunt issues calls it). I also want to not feel like an annoying, high maintenance pt!
As I am sure is more than obvious from this I am feeling more than a little discouraged by these symptoms, sure they may be intermittent but it frustrates me that reading, most of the time is so difficult (a problem when headaches are a problem but these have been occurring more often). And as I wrote above that everyday, especially mornings and for that matter nights are so crappy. I get up hours before I have to do anything so at least the worst H/A's are somewhat improved (though they repeatedly recur, just to a milder degree) and honestly I might sell my R foot to sleep through the night once!?!

Most of all I just wish I felt like I had hope, that I would never have to ask Dr.Bragg for help again with headaches/shunt issues and that it was easier to communicate with Providers (as well to getting them to communicate).
I think I feel most discouraged b/c while Dr.Bragg always said something to the effect of 'we have options, I'm not going to give up' I admittedly still feel like we don't have as many options and it is sometimes really hard spending so much time, feeling so bad. I know (as I've written before) I look fine when people see me so that to while a good thing in a way doesn't exactly help getting answers.
I guess i'll just keep praying we can come up with something sooner. I honestly am not sure I can deal w these symptoms long enough to find out if we could get IT approved in an IRB (I kind of have my doubts but trying to be a little hopeful).
I can wish, right?
Anyways, sorry if this is awfully discouraging. I guess really I don't have to apologize since it is my own blog but it would be nicer (and is) when I am posting about something positive or even better when I am posting that something we tried helped!!!!

In any case, thanks for stopping by,
Erica
P.S: I've come to the conclusion maybe I need to go to Church everyday (we have service 1x weekly or the same service on Th night and on Sun). I feel restored in a way after Church but then my doubts resurface even though I know I should put my faith, hurts and pains to God.

Saturday, August 23, 2014

Bay Beach (Amusement Park) - mostly

Let me say, I like the outdoors but I am not an outdoors person in particular! That said other than the mud and wet our little overnight camping adventure (after the Amusement Park) Fri and today was fun. My parents have a tow behind-full size (all amenities I guess you'd say) camper so my Sister and I had drove up separately yesterday, met my parents at Bay Beach and afterwards followed them to the Campground.
My Sister, the kids and I did tents - although my Mom had gotten a fold out/reclining chair so I was still able to sleep upright and off the ground. Honestly other than bathrooms I like the campfires, playing at the park w the kids and we had a good time exploring the (small) downtown last night in Algoma, which is on the tip of Door County and right on Lake Michigan.
I definitely was happy to be home this afternoon though, it wasn't a ridiculously long drive (about 2.5 hrs) but I was tired, couldn't wait to shower in my own comforts and I like being un-packed! =)
I have to say I had been praying all week to feel atleast reasonably ok while at the Amusement Park Fri and overnight which despite waking up no-less than 4-5-6 times Thurs night my low back and leg didn't hurt to bad and I couldn't complain to bad how I felt at the Bay Beach! I honestly think sometimes God just knows when we need a break and will always believe he listens even if we don't always get our answer!

As far as Bay Beach (the Amusement Park) we got there by 9:30, the rides open at 10 and Zan, Quinn and I where in the first bunch to get on the Ferris Wheel which otherwise the line gets ridiculously long. I'm not sure there is any ride you have to wait more than 20mins and typically more like 5-15min wait but the Ferris Wheel gets sooooo backed up!

From there Zan and I did the kiddie helicopters, I went on the tilt-a-whirl, (no affect whatsoever on the lightheaded/weird feeling I've been having intermittently!) - My Dad, Quinn and I did this one. Another of my favorites and ironically a ride I detested as a kid!

After that we did a wide variety from the Carousel, 100ft slide (you ride down on potato sacks though the slide could seriously use some new grease!), Giant swings, the kids did some kids rides. My Dad, Mom and Quinn did the scrambler (that line also gets pretty long or I'd do it!) and we did some of the other rides + some rides multiple times.
In the past few years Bay Beach purchased a old wooden roller coaster that used to be owned by Elvis Presley at his park - (the Zippen Pippen) so I decided to try that this year. YIKES! Probably NEVER again! Wowza on your body is all I can say, perhaps worse to me b/c I don't have full range of motion in my neck!? I've already had somewhat of a stiff neck for a week or so so today my neck and body feel like they've added about 40yrs on and feel like creeky stairs whenever I move! It was Fun (for the most part!) but wouldn't do it again!
The Park also purchased a new wooden rocking boat (like at carnivals where it tips way up in the air one way then comes rocking back and goes up in the air the opposite way) though surprisingly none in our bunch did this.
Really the best part about Bay Beach is even when it's busy the lines aren't anywhere near Six Flags or Disney wait times and the tickets which you need at most 3 but typically 1-2 per ride, per person are 25c a piece.
Consider at a fair the tickets are typically $3/piece that's crazy! This park is owned by the City of Green Bay but has a trust set up by some Lady when she passed away so her on-going endowment runs most of the costs, pays for upkeep/new rides apparently and she wrote in to her will that park costs could never increase beyond a certain point. When we where kids and went there every year, roughly 20 yrs ago the tickets where 10c a piece so the cost haven't increased much!
Typically we'll have a stack of tickets left at the end of the day (when we are done anyways) so we just give them to someone at the park or as they are coming in to the ride area. It's neat!
I am glad overall it was a good day and my stiff/sore/tired body will recover. I know I could not do all that craziness and thus in turn not pay for it the days after but what is life if we don't do the things we enjoy? Honestly I need days like yesterday to re-charge as I had been feeling a little discouraged, I've been feeling not that great so to spend a day almost (almost!) forgetting it all is just what I needed! =)


On an un-related note I was reading some med records from PMR and Neurosurgery and just wanted to share this thought Dr.Bragg had in one of her recent clinic post-visit notes.
..."The other potential would be cranial vault expansion, as Erica has significant thickness to her skull." (no smart arsh comments anyone) =) "She said she discussed this with other physicians who have significant experience with Mucopolysaccharidoses who felt that the reason that she has poor CSF flow is related to her underlying Mucopolysaccharidoses.
"The 1 thing is that Erica does feel better when she has had externalized shunts, so I do feel there is a compliance issue related to her CSF and her inability to be headache-free when her shunt(s) is internalized." -
Prior to this comment she talks about the concern with potentially adding an anti-siphon device both in would it slow CSF down to much (she comments regarding this especially b/c I sleep upright and have almost without fail since beginning to see her minus the short varied periods we've had H/A's under good control) or on the other hand she wonders are the H/A's due to over drainage and partial intermittent occlusion of the shunt catheter. <-- In the case of if it where intermittent over drainage a anti-siphon device may be helpful. Last wk when she had talked to her Codman Rep that person also was not clear on what we should do in this regards.
I just share these sentiments b/c while Dr.Bragg and I of course talked about these options (she also mentions getting more info about the potential for IT) I know I don't always likely remember everything we talk about fully or atleast completely correctly and is interesting to read her thoughts in print.
I often think it would be helpful to record appts with some Specialists but I don't want to put them on edge and would never do it without disclosing I was recording!
I'll update if I hear any news from either Dr.Bragg or anything going on in general. My Pain Mngmt dr was texting w me a little yesterday and mentioned she would probably try calling Dr.Bragg to get more info on what her thoughts are regarding the low back issues.
In any case that is about all,
Thanks for stopping by,
Erica